Not the supportive, strong wife I want to be.

Hi Bella12,

So sorry you are going through this too. It is a lot to take in at the beginning. If you have any specific questions please ask away. It’s an emotional rollercoaster to be sure and there will be good days and bad days for both of you. It’s important to look after yourself and your mental health too and try not to feel guilty for doing so.

It sounds like your path may be similar to ours. My husband was diagnosed as T3 rectal tumour with multiple lymph nodes and vascular invasion back in May. So far he’s had 5 weeks chemoradiotherapy and is currently on capox chemotherapy which will hopefully be finished before Christmas. The expectation is that it will be op in the new year. They give you a huge list of side effects before you start treatment which is scary and we went into it expecting the worst. And although it is tough to watch him go through it, he has coped remarkably well with it all. The oncology team, both nurses and doctors,  have been fantastic throughout and we have always felt in good hands. We have rung the emergency helpline at least twice for my husbands symptoms and I would say always reach out to them if there are any concerns or difficult side effects as they are great at reassuring you and finding the best solutions to keep the side effects as manageable as possible.

Hugs X

Thank you ! 

how long after diagnosis did he start treatment and what was the time scale. 
trying to set some expectations in my head  …. Eg this time next year we will be  …… 

thank you so much for sharing xx 

hugs x 

For us this was the sequence of events…

May 4th - colonoscopy and told with 99% certainty it was a tumour. CT and MRI within the next week or so.

May 22nd - appointment with surgeon and given diagnosis

June 3rd - appointment with oncologist and given treatment plan

June 24th - started chemoradiotherapy. 5 days a week for 5 weeks

August 15th - started capox chemotherapy (6 x 3 week cycles). So fingers crossed we will be done with treatment by Christmas. 

The plan is after the end of chemo for MRI to get current status of tumour and then schedule surgery. The exact nature of which will depend on response to treatment. The surgeon didn’t have clear resection margins at the start so we are hoping for sufficient shrinkage for surgery to involve only the rectum.

I don’t know how much you know yet about your treatment plan. For the chemoradiotherapy it is usually either fast track (higher dose for 5 days only) or standard (25 doses over 5 weeks). And if he gets capox which is the most common for rectal neoadjuvant (i.e. pre-surgery) chemo it is usually somewhere between 4 and 6 cycles, each with an infusion of oxaliplatin on day 1, capecitibine tablets for 2 weeks and then 1 week off before starting again. We have been lucky so far and not had any delays but it is not unusual for cycles to be delayed slightly due to low neutrophil levels or other reasons such as an infection. 

Hopefully you’ll have an appointment scheduled with the oncologist soon and then have a clearer idea of what lies ahead. The uncertainty at the beginning is really tough and most people find it a little easier once there is a plan in place to focus on. I had both the advantage and disadvantage of working as a cancer researcher and interact daily with oncologists… so I had a lot of advice and information to go on but also was used to hearing all the worst case scenarios and stats which wasn’t so helpful.

Good luck with everything and keep In touch X